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Remicade brought me shattered dream !

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Ulcerative Colitis
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Posted 9/6/2007 5:55 PM (GMT -6)
I already had 2 infusions & the 3rd one will be another 2 weeks time. But this morning, I notice blood in the stood; does this indicate that Remicade is a failure for me ??

I hate to declare this much to my chinese believe in superstition that I do not suffer clamp, pain nor anything else except for those extra toilet trips per day previously.(almost 2 yrs)

To me, UC is just a nuisance illness that irritate the hell out of people than life threatening, well I could be proven wrong though..

I am getting tired, exhausted, and at the same time broke cuz I don't earn USD to pay for the over-priced Remicade...( 1 USD = 3.5 MYR)

or Rather, should I consider myself lucky just to have UC whereas in the chemo room where I had the infusion , they are 4th stage cancer patients...

I am feeling DOWN as if I was hit by 10-ton truck...

 

Posted 9/6/2007 8:27 PM (GMT -6)
Hi Giorgio; I don't believe I've officially welcomed you to HealingWell. I think I'd give the Remi a few more trys before giving up on it. You also might want to try an enema such as Rowasa along with it to get you into remission. For most folks it can take about 4 infusions before they start noticing a difference. Have you had less urgency or bathroom trips since starting? I truly hope the Remi works for you; I know how dissapointing it can be when you start getting some symptoms again. Take care and let us know how you are coming along.
Posted 9/7/2007 8:13 AM (GMT -6)

Giorgio said...
I already had 2 infusions & the 3rd one will be another 2 weeks time. But this morning, I notice blood in the stood; does this indicate that Remicade is a failure for me ??


I hate to declare this much to my chinese believe in superstition that I do not suffer clamp, pain nor anything else except for those extra toilet trips per day previously.(almost 2 yrs)

To me, UC is just a nuisance illness that irritate the hell out of people than life threatening, well I could be proven wrong though..



I am getting tired, exhausted, and at the same time broke cuz I don't earn USD to pay for the over-priced Remicade...( 1 USD = 3.5 MYR)



or Rather, should I consider myself lucky just to have UC whereas in the chemo room where I had the infusion , they are 4th stage cancer patients...



I am feeling DOWN as if I was hit by 10-ton truck...

Ulcerative Colitis sucks my friend.. I have my ups and downs as well. Just try and keep a stiff upper lip and move forward.. maybe a cure or some better treatments will come..
Posted 9/7/2007 8:59 AM (GMT -6)
Giorgio - Welcome to HW!

It's such a downer when things look bad after looking good for a while. I agree with Loneylane - check on the Rowasa and give the Remicade a bit more time. It could be that your colon is in such a spot that it needs the extra help.

Wishing you the best!
Posted 9/7/2007 9:35 AM (GMT -6)
I felt like my first two infusions did nothing and I had to go back on Prednisone just before my third. Usually I have to start at 40mg and wean down to see a difference. This time my doctor started me on 25 and I felt better than I have since I got the disease. I have since weaned off the prednisone and my symptoms come back for a day or two, then it seems like Ill go back into remission for a couple days. This has never happened before usually once my symptoms come back its a constant downward spiral. My 4th infusion is coming up in about a month and hopefully I won't have to get on any additional meds before then.
Posted 9/11/2007 8:56 PM (GMT -6)
I've had 3 infusions so far, with no luck in the long run (months). I saw improvement after the first two infusions (stool formation, less urgency). After the third infusion though it was like I plateaued. I didn't notice any change in symptoms since the improvement...then after two weeks or so I seemed to be slipping back into the flare. I was put on 6MP, but after 5 weeks I had to go off because I was getting flu-like symptoms. So now I'm back to flaring 10-15 times a day (blood, diarrhea, mucus). With just a maintenance dose of asacol and a rowasa at night I'm thinking about asking if I can go on prednisone again, since they took me off the 6MP. My next infusion is this coming monday, so maybe I'll try to hold out. I keeping up hope that it really does take 4 infusions to start seeing real benefits. Good luck.
Posted 9/11/2007 9:54 PM (GMT -6)

I will have my 9th infusion of remicade tomorrow!!!! I finally am able to go out, and work again!!! (I am sure that you have never heard that before;)!)

I can't believe that I somewhat have my life back!

I do remicade treatments every 28 days, and tomorrow I will graduate to every six weeks!!! please dont give up hope, i have been battling UC Since summer of 04 and with the help of my Gastro was finally taken off prednisone after 3 years.

I'm on 100 mg of imuran and 4X2 asacol plus the remi treatments and you know what?  I look forward to my treatments everytime now, sounds kind of silly!  It takes times, I have been where you are!  I refuse to go back on prednisone, even if I have a bad case of bronchitis or my asthma flares up!!!! Remicade works, but it is not overnight, that is for sure!!!

Posted 9/24/2007 7:32 PM (GMT -6)
Definitely give it more time! I have been on remicade for almost 3 years. It has totally given me my life back!
Posted 9/25/2007 9:10 AM (GMT -6)
Farahk...If you're on 100 mg of Imuran plus taking Remicade how do you know which one helped. I stopped Remicade then went on Imuran (200 mg/day). Imuran worked better than the Remicade for me and it's cost is magnitudes less. Imuran takes 6-8 weeks to notice anything. It's probably wicked on the body in other ways, though.
Posted 9/25/2007 11:05 PM (GMT -6)
eat anything you can tolerate--let your body decide what works--I like chicken soup and Indian food and I've found that...
uncooked fruit gives diarrhea
beans and carbonated drinks give gas
uncooked vegitables are painful
caffiene provokes bm's
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